Invisible Disabilities Week – My Story

I just learned today that it is Invisible Disabilities Week. As someone who has spent her whole adult life with an invisible disability, I thought I would share this ‘short’ anecdote on what it is like to look strong and healthy but struggle with a pain and disability that is not obvious to the casual observer. I know I promised short, but this wasn’t planned and you know me, this could go on a bit, for which I apologise in advance – but there are some nice photos too (and yes, that is a packet of crisps in front of me!)

Many moons ago, in a county far, far away, I had a prolapsed disc that refused to heal. I was in my early twenties with a toddler son, had spent a couple of months in bed on the advice of my doctor but could not get moving. I did, however, read the complete Thomas Hardy oeuvre and while doing so, discovered my son was teaching himself to read when he looked at a paragraph containing lots of t’s, p’s and s’s and announced, ‘Look, Mummy, that’s like Top of the Pops!’ (A popular BBC chart programme).

I had three weeks in hospital on traction where even hospital staff would leave my meals by the side of my bed while I lay flat on my back unable to reach, because I was young and they were preoccupied with the older patients. Eventually, I was sent home with a steel reinforced surgical corset and instructions not to spend a lot of time sitting. A few weeks later, I had my check-up appointment at the hospital. There had been no improvement. Despite the ‘no sitting’ command, I was kept waiting – and sitting – for two hours for a five minute chat that ended with ‘come back in a few weeks’.

Afterwards, I had to wait in reception for a sitting ambulance to take me home. Unfortunately, it was almost lunchtime but there was one ambulance leaving before the lunch-break and I inwardly heaved a sigh of relief. I was in excruciating pain, all the while knowing that things were going to get worse not better for my trip to the doctor (a constant theme in my life) and all this sitting was doing me more harm than good.

A driver came over. He had one seat left. He looked at the elderly lady next to me with a stick. She had told me she had been to the audio clinic to have her hearing checked. He looked at me. Young, smiling, long shiny hair. He chose the elderly lady.

I wanted to cry. I didn’t know how I was going to get through the next hour, possibly longer, before another ambulance left. Not only was I in pain, but despite the corset, I didn’t have enough strength to sit upright, I kept tilting.

I eventually made it home about 3 p.m., having left home at 8.30 a.m. Up until that point, I hadn’t sat for more than half an hour at a time in several months. The pain was so severe I almost passed out before I could get upstairs to bed. My poor excited son had to make do with the briefest of hugs before the painkillers took hold and knocked me out.

That was a long time ago. During the interim decades, things have improved and got worse and improved in a monotonous recycled pattern including surgery, torturous treatments and therapies, car accidents and so on. My overall health is much improved since I changed my diet and lifestyle, gave up prescription drugs that never helped and always made things worse, and took my health into my own hands. However, despite seasonal improvements during warm weather, I have never regained my strength and full mobility.

And yet… just yesterday, my elderly mum was lauding my efforts to look after her during her stay at the weekend, saying ‘It’s lovely to have my daughter back, back to normal!’ A smile and a talent for acting work wonders in reassuring others, but they also help make a disability invisible and raise expectations.

On Saturday, we took Mum out to see the barges on the canal. She had a lovely time, sitting in the sun eating ice-cream – where unexpectedly, an owl and a hawk where among the patrons! – happy that the three of us were able to have a rare outing together. I usually stay at home.

She went home next morning and I spent the rest of the day sorting out all her files (with the help of a green smoothie of course).

This morning, I couldn’t get out of bed. My whole body felt like I had been kicked by a mule, my back was on fire, I had no strength, I was exhausted despite twelve hours in bed. I couldn’t get dressed. When I did get up, about 11.30 a.m., I sat with a heated pad on my back while my husband brought me herbal anti-inflammatory drops and an anti-inflammatory ginger and turmeric juice.

Two hours later, I am dressed and writing this post. I will soon be making phonecalls on my mother’s behalf. I will call her to see if she is ok after the journey home. I won’t of course tell her how I’m feeling.

As someone recently said to me, we have no idea what is going on in other people’s lives. If someone is rude, irritable, in a bad mood, unwilling to contribute help to some event you’re organising or collect your kids from school etc. please bear in mind they may be suffering a devastating migraine attack or a flare-up of rheumatoid arthritis; they may have an undiagnosed brain tumour, they may have insufferable chronic pain, MS, ME, or any number of invisible conditions. If they are behaving ‘inappropriately’, they may have Asperger’s, anxiety, dementia, having a panic attack, depression or on the verge of going into a diabetic coma.

And most of all, just because someone with a disability or chronic illness can do something one day, doesn’t mean at all that they can do it repeatedly, or even ever again. My mum thinks that everything I do when she is here is what I do every day. She has no appreciation of the superhuman effort I make when she – or anyone else – is here, to make her stay comfortable, to give her something to tell her friends about, some nice memories. But once she has left, I am back in bed, desperate for rest and relief.

Please note: This was written on the spur of the moment as a plea on behalf of others, not for sympathy. I am used to the ups and downs of my life and make the most of it. I am a positive person who laughs a lot and I enjoy seeing Mum doing things she wouldn’t otherwise get to do and I know it means a lot to her that I join in.

I am sorry about your disability, and I completely understand. My husband has been disabled for several years from a form of arthritis called CPPD. He’s been told that the only thing he can do is to keep getting his joints replaced. He’s had both hips and his shoulder replaced and now needs his knees replaced. Because he’s upright and walking, people think he should be able to do everything that everyone else does–like go to work everyday.

There is always someone worse off than yourself, I am sorry to hear he needs further surgery. It must be an uphill battle for both of you. This week I’ve had both my dentist and my elderly neighbour say how well I look and remark on how pleased they are to see me out walking, no sticks, it so hard to burst their bubble and point out that as soon as the winter comes I will be spending 5 months indoors because I can’t risk a fall, I can’t cope with the cold or strong winds etc and so come April, I will be starting from scratch again. Every year is like groundhog day for me. Some years I manage to build up some strength and others I’ve lost it all again, but my diet has certainly made a huge difference. And because I look so much better people think I’ve had some miraculous cure, even my mum. But it’s all smoke and mirrors, as I’m sure it is in many households where someone has a disability or chronic condition, I can function because I have someone to do all the stuff I can’t and to support me financially too. Thanks for your understanding, and I hope your husband finds some relief.